Newly diagnosed...for the 2nd time in 28yrs

V

Veneicia

New member
I am a 34 yo mom of 3 living in Upstate NY. I have been sickly w/ either upper respitory or sinus infections my entire life. let me tell you my story in a nutshell...
Background:
Back in 1980 I was diagnosed w/ CF, or shall I say tested positive, however my mom refused to believe it- to the point she took me to an out of state hospital to have the tests run again. I'm assuming they came back negative or still borderline??? I'm not sure, and my mother has passed away so I am unable to obtain any info.

Present:
From June 2006- Thanksgiving 2007 I was on antibiotics every 4-6 weeks b/c I could not shake my sinus infection. I have told doctors about my past, and it's like none of them either cared or believed me- In fact when I met who is my doctor now, I walked in and said I am one of the sickliest 32 yo(at that time) you have ever met- he laughed at me and said "I doubt it".

Ok- so, finally, I had nasal surgery back in March of 2006 hoping that would help- in fact it really didn't and in a wierd ways seems to have triggered something to make me worse.

Finally October 2007, I went to after hours...drained and I told the doc....I'm so sick of being sick, and I'm to the point if I had something really bad like pneumonia- I would not have the fight to continue on. He told me he didn't want to give me anymore antibiotics b/c of me being on them- A LOT! So he decided to swab my nose. he called me immidiately saying they had found pseudonomas, and he thought it was strange b/c that's linked to CF patients. So again, I went through my past w/ him and he wanted me to talk to my docs. about the situation.

I called my primary...and he said don't worry about it b/c EVERYONE has pseudonomas...so I was mad to a degree- but let it slide.
I then went to my surgon, and instantly it threw up red flags to him, and he gave kudos to the afterhours for taking the steps to check me out. Telling him about my past for the millionth time, he wanted me to go get a sweat test.

Dec 27,2007
8am<img src="i/expressions/face-icon-small-blush.gif" border="0">k, so it's bad enough walking into a childrens hospital w/ your 2 yo twins, and them thinking they are the ones being tested- I think I turned every shade of red.
5:30pm found out my results came back borderline positive w/ the # being 52.

I am scheduled to go in for a 2nd sweat test this Fri, and then for genetic testing or something on Monday. In a way I feel the 2nd test is pointless....my mom dies of pneumonia at 44, my dad died of something? at 39....how many times does one have to test borderline, and be as sickly as I have been for somebody to do something.

So, I am going to go by my first result being 52 which is alot closer to positive than negative.....what happens now?

Thank you everyone!
Veneicia
 
V

Veneicia

New member
I am a 34 yo mom of 3 living in Upstate NY. I have been sickly w/ either upper respitory or sinus infections my entire life. let me tell you my story in a nutshell...
Background:
Back in 1980 I was diagnosed w/ CF, or shall I say tested positive, however my mom refused to believe it- to the point she took me to an out of state hospital to have the tests run again. I'm assuming they came back negative or still borderline??? I'm not sure, and my mother has passed away so I am unable to obtain any info.

Present:
From June 2006- Thanksgiving 2007 I was on antibiotics every 4-6 weeks b/c I could not shake my sinus infection. I have told doctors about my past, and it's like none of them either cared or believed me- In fact when I met who is my doctor now, I walked in and said I am one of the sickliest 32 yo(at that time) you have ever met- he laughed at me and said "I doubt it".

Ok- so, finally, I had nasal surgery back in March of 2006 hoping that would help- in fact it really didn't and in a wierd ways seems to have triggered something to make me worse.

Finally October 2007, I went to after hours...drained and I told the doc....I'm so sick of being sick, and I'm to the point if I had something really bad like pneumonia- I would not have the fight to continue on. He told me he didn't want to give me anymore antibiotics b/c of me being on them- A LOT! So he decided to swab my nose. he called me immidiately saying they had found pseudonomas, and he thought it was strange b/c that's linked to CF patients. So again, I went through my past w/ him and he wanted me to talk to my docs. about the situation.

I called my primary...and he said don't worry about it b/c EVERYONE has pseudonomas...so I was mad to a degree- but let it slide.
I then went to my surgon, and instantly it threw up red flags to him, and he gave kudos to the afterhours for taking the steps to check me out. Telling him about my past for the millionth time, he wanted me to go get a sweat test.

Dec 27,2007
8am<img src="i/expressions/face-icon-small-blush.gif" border="0">k, so it's bad enough walking into a childrens hospital w/ your 2 yo twins, and them thinking they are the ones being tested- I think I turned every shade of red.
5:30pm found out my results came back borderline positive w/ the # being 52.

I am scheduled to go in for a 2nd sweat test this Fri, and then for genetic testing or something on Monday. In a way I feel the 2nd test is pointless....my mom dies of pneumonia at 44, my dad died of something? at 39....how many times does one have to test borderline, and be as sickly as I have been for somebody to do something.

So, I am going to go by my first result being 52 which is alot closer to positive than negative.....what happens now?

Thank you everyone!
Veneicia
 
V

Veneicia

New member
I am a 34 yo mom of 3 living in Upstate NY. I have been sickly w/ either upper respitory or sinus infections my entire life. let me tell you my story in a nutshell...
Background:
Back in 1980 I was diagnosed w/ CF, or shall I say tested positive, however my mom refused to believe it- to the point she took me to an out of state hospital to have the tests run again. I'm assuming they came back negative or still borderline??? I'm not sure, and my mother has passed away so I am unable to obtain any info.

Present:
From June 2006- Thanksgiving 2007 I was on antibiotics every 4-6 weeks b/c I could not shake my sinus infection. I have told doctors about my past, and it's like none of them either cared or believed me- In fact when I met who is my doctor now, I walked in and said I am one of the sickliest 32 yo(at that time) you have ever met- he laughed at me and said "I doubt it".

Ok- so, finally, I had nasal surgery back in March of 2006 hoping that would help- in fact it really didn't and in a wierd ways seems to have triggered something to make me worse.

Finally October 2007, I went to after hours...drained and I told the doc....I'm so sick of being sick, and I'm to the point if I had something really bad like pneumonia- I would not have the fight to continue on. He told me he didn't want to give me anymore antibiotics b/c of me being on them- A LOT! So he decided to swab my nose. he called me immidiately saying they had found pseudonomas, and he thought it was strange b/c that's linked to CF patients. So again, I went through my past w/ him and he wanted me to talk to my docs. about the situation.

I called my primary...and he said don't worry about it b/c EVERYONE has pseudonomas...so I was mad to a degree- but let it slide.
I then went to my surgon, and instantly it threw up red flags to him, and he gave kudos to the afterhours for taking the steps to check me out. Telling him about my past for the millionth time, he wanted me to go get a sweat test.

Dec 27,2007
8am<img src="i/expressions/face-icon-small-blush.gif" border="0">k, so it's bad enough walking into a childrens hospital w/ your 2 yo twins, and them thinking they are the ones being tested- I think I turned every shade of red.
5:30pm found out my results came back borderline positive w/ the # being 52.

I am scheduled to go in for a 2nd sweat test this Fri, and then for genetic testing or something on Monday. In a way I feel the 2nd test is pointless....my mom dies of pneumonia at 44, my dad died of something? at 39....how many times does one have to test borderline, and be as sickly as I have been for somebody to do something.

So, I am going to go by my first result being 52 which is alot closer to positive than negative.....what happens now?

Thank you everyone!
Veneicia
 
V

Veneicia

New member
I am a 34 yo mom of 3 living in Upstate NY. I have been sickly w/ either upper respitory or sinus infections my entire life. let me tell you my story in a nutshell...
Background:
Back in 1980 I was diagnosed w/ CF, or shall I say tested positive, however my mom refused to believe it- to the point she took me to an out of state hospital to have the tests run again. I'm assuming they came back negative or still borderline??? I'm not sure, and my mother has passed away so I am unable to obtain any info.

Present:
From June 2006- Thanksgiving 2007 I was on antibiotics every 4-6 weeks b/c I could not shake my sinus infection. I have told doctors about my past, and it's like none of them either cared or believed me- In fact when I met who is my doctor now, I walked in and said I am one of the sickliest 32 yo(at that time) you have ever met- he laughed at me and said "I doubt it".

Ok- so, finally, I had nasal surgery back in March of 2006 hoping that would help- in fact it really didn't and in a wierd ways seems to have triggered something to make me worse.

Finally October 2007, I went to after hours...drained and I told the doc....I'm so sick of being sick, and I'm to the point if I had something really bad like pneumonia- I would not have the fight to continue on. He told me he didn't want to give me anymore antibiotics b/c of me being on them- A LOT! So he decided to swab my nose. he called me immidiately saying they had found pseudonomas, and he thought it was strange b/c that's linked to CF patients. So again, I went through my past w/ him and he wanted me to talk to my docs. about the situation.

I called my primary...and he said don't worry about it b/c EVERYONE has pseudonomas...so I was mad to a degree- but let it slide.
I then went to my surgon, and instantly it threw up red flags to him, and he gave kudos to the afterhours for taking the steps to check me out. Telling him about my past for the millionth time, he wanted me to go get a sweat test.

Dec 27,2007
8am<img src="i/expressions/face-icon-small-blush.gif" border="0">k, so it's bad enough walking into a childrens hospital w/ your 2 yo twins, and them thinking they are the ones being tested- I think I turned every shade of red.
5:30pm found out my results came back borderline positive w/ the # being 52.

I am scheduled to go in for a 2nd sweat test this Fri, and then for genetic testing or something on Monday. In a way I feel the 2nd test is pointless....my mom dies of pneumonia at 44, my dad died of something? at 39....how many times does one have to test borderline, and be as sickly as I have been for somebody to do something.

So, I am going to go by my first result being 52 which is alot closer to positive than negative.....what happens now?

Thank you everyone!
Veneicia
 
V

Veneicia

New member
I am a 34 yo mom of 3 living in Upstate NY. I have been sickly w/ either upper respitory or sinus infections my entire life. let me tell you my story in a nutshell...
Background:
Back in 1980 I was diagnosed w/ CF, or shall I say tested positive, however my mom refused to believe it- to the point she took me to an out of state hospital to have the tests run again. I'm assuming they came back negative or still borderline??? I'm not sure, and my mother has passed away so I am unable to obtain any info.

Present:
From June 2006- Thanksgiving 2007 I was on antibiotics every 4-6 weeks b/c I could not shake my sinus infection. I have told doctors about my past, and it's like none of them either cared or believed me- In fact when I met who is my doctor now, I walked in and said I am one of the sickliest 32 yo(at that time) you have ever met- he laughed at me and said "I doubt it".

Ok- so, finally, I had nasal surgery back in March of 2006 hoping that would help- in fact it really didn't and in a wierd ways seems to have triggered something to make me worse.

Finally October 2007, I went to after hours...drained and I told the doc....I'm so sick of being sick, and I'm to the point if I had something really bad like pneumonia- I would not have the fight to continue on. He told me he didn't want to give me anymore antibiotics b/c of me being on them- A LOT! So he decided to swab my nose. he called me immidiately saying they had found pseudonomas, and he thought it was strange b/c that's linked to CF patients. So again, I went through my past w/ him and he wanted me to talk to my docs. about the situation.

I called my primary...and he said don't worry about it b/c EVERYONE has pseudonomas...so I was mad to a degree- but let it slide.
I then went to my surgon, and instantly it threw up red flags to him, and he gave kudos to the afterhours for taking the steps to check me out. Telling him about my past for the millionth time, he wanted me to go get a sweat test.

Dec 27,2007
8am<img src="i/expressions/face-icon-small-blush.gif" border="0">k, so it's bad enough walking into a childrens hospital w/ your 2 yo twins, and them thinking they are the ones being tested- I think I turned every shade of red.
5:30pm found out my results came back borderline positive w/ the # being 52.

I am scheduled to go in for a 2nd sweat test this Fri, and then for genetic testing or something on Monday. In a way I feel the 2nd test is pointless....my mom dies of pneumonia at 44, my dad died of something? at 39....how many times does one have to test borderline, and be as sickly as I have been for somebody to do something.

So, I am going to go by my first result being 52 which is alot closer to positive than negative.....what happens now?

Thank you everyone!
Veneicia
 
W

welshwitch

Guest
Wow..what a story!

I'm sure everyone who responds to this post will tell you to GO GO GO for the genetic test to confirm your CF diagnosis....I even had one at 26 for my new Dr. who just wanted to "double check" that I actually had CF b/c my symptoms were so mild. But then again, I was diagnosed at 9 months.

One thing I've learned from this website is that there is sooo much you can do to make yourself feel better and that it's never too late to start. For example, if you DO find out you have CF, you can get on all the medications that WILL DEFINITELY make you feel better. I'm on digestive enzymes and pulmozyme, an inhaled med. to help my lungs stay clear and healthy...but there are many, many other methods and regimens that people pick and choose from on this forum.

Good luck to you...and let us know what happens with your diagnosis and treatment! There are lots of people in your situation on this website and you will DEFINITELY feel better once you are given the tools to do so!!!!
 
W

welshwitch

Guest
Wow..what a story!

I'm sure everyone who responds to this post will tell you to GO GO GO for the genetic test to confirm your CF diagnosis....I even had one at 26 for my new Dr. who just wanted to "double check" that I actually had CF b/c my symptoms were so mild. But then again, I was diagnosed at 9 months.

One thing I've learned from this website is that there is sooo much you can do to make yourself feel better and that it's never too late to start. For example, if you DO find out you have CF, you can get on all the medications that WILL DEFINITELY make you feel better. I'm on digestive enzymes and pulmozyme, an inhaled med. to help my lungs stay clear and healthy...but there are many, many other methods and regimens that people pick and choose from on this forum.

Good luck to you...and let us know what happens with your diagnosis and treatment! There are lots of people in your situation on this website and you will DEFINITELY feel better once you are given the tools to do so!!!!
 
W

welshwitch

Guest
Wow..what a story!

I'm sure everyone who responds to this post will tell you to GO GO GO for the genetic test to confirm your CF diagnosis....I even had one at 26 for my new Dr. who just wanted to "double check" that I actually had CF b/c my symptoms were so mild. But then again, I was diagnosed at 9 months.

One thing I've learned from this website is that there is sooo much you can do to make yourself feel better and that it's never too late to start. For example, if you DO find out you have CF, you can get on all the medications that WILL DEFINITELY make you feel better. I'm on digestive enzymes and pulmozyme, an inhaled med. to help my lungs stay clear and healthy...but there are many, many other methods and regimens that people pick and choose from on this forum.

Good luck to you...and let us know what happens with your diagnosis and treatment! There are lots of people in your situation on this website and you will DEFINITELY feel better once you are given the tools to do so!!!!
 
W

welshwitch

Guest
Wow..what a story!

I'm sure everyone who responds to this post will tell you to GO GO GO for the genetic test to confirm your CF diagnosis....I even had one at 26 for my new Dr. who just wanted to "double check" that I actually had CF b/c my symptoms were so mild. But then again, I was diagnosed at 9 months.

One thing I've learned from this website is that there is sooo much you can do to make yourself feel better and that it's never too late to start. For example, if you DO find out you have CF, you can get on all the medications that WILL DEFINITELY make you feel better. I'm on digestive enzymes and pulmozyme, an inhaled med. to help my lungs stay clear and healthy...but there are many, many other methods and regimens that people pick and choose from on this forum.

Good luck to you...and let us know what happens with your diagnosis and treatment! There are lots of people in your situation on this website and you will DEFINITELY feel better once you are given the tools to do so!!!!
 
W

welshwitch

Guest
Wow..what a story!

I'm sure everyone who responds to this post will tell you to GO GO GO for the genetic test to confirm your CF diagnosis....I even had one at 26 for my new Dr. who just wanted to "double check" that I actually had CF b/c my symptoms were so mild. But then again, I was diagnosed at 9 months.

One thing I've learned from this website is that there is sooo much you can do to make yourself feel better and that it's never too late to start. For example, if you DO find out you have CF, you can get on all the medications that WILL DEFINITELY make you feel better. I'm on digestive enzymes and pulmozyme, an inhaled med. to help my lungs stay clear and healthy...but there are many, many other methods and regimens that people pick and choose from on this forum.

Good luck to you...and let us know what happens with your diagnosis and treatment! There are lots of people in your situation on this website and you will DEFINITELY feel better once you are given the tools to do so!!!!
 
J

JORDYSMOM

New member
Veneicia welcome to the site. I'm sorry you have gone through so much to get to this point. My son wasn't diagnosed with CF until he was 15 yo, because his symptoms were not glaringly obvious, and he was misdiagnosed pretty much the same as you have been.

I'm sorry about your parents passing. I'm sure your mom's wishful thinking clouded her judgement back when you were originally sweat tested. It's easy to understand though, because no one wants to hear that their child has a terminal illness.

The good news is that you are on your way to getting to the bottom of it now. Sweat tests are sometimes inaccurate. There are people on this site who have CF, but have normal to low sweat test numbers. Even if your numbers come back borderline or normal, please demand the FULL PANEL genetic test. There are over 1800 known CF mutations now, so having the full panel done is important. Usually, it is the insurance companies who require the second sweat test. They want two positive tests before they will agree to pay for the genetic test. You may have to fight with them over it. Do fight for it. You deserve answers!

It sounds like you may have finally found a doctor who will listen to you. Good! There are certain patients who get a clinical diagnosis of CF, meaning they have enough symptoms to justify it. Others get a genetic diagnosis. That is when they identify two known mutations in your DNA. Either way, getting treatment can do wonders for you. I've met people here who don't quite have a diagnosis yet, but are being treated as if they have CF, and they are benefiting greatly for it.

I hope you find this site as informative and supportive as I have. Let us know what you find out.

Stacey
 
J

JORDYSMOM

New member
Veneicia welcome to the site. I'm sorry you have gone through so much to get to this point. My son wasn't diagnosed with CF until he was 15 yo, because his symptoms were not glaringly obvious, and he was misdiagnosed pretty much the same as you have been.

I'm sorry about your parents passing. I'm sure your mom's wishful thinking clouded her judgement back when you were originally sweat tested. It's easy to understand though, because no one wants to hear that their child has a terminal illness.

The good news is that you are on your way to getting to the bottom of it now. Sweat tests are sometimes inaccurate. There are people on this site who have CF, but have normal to low sweat test numbers. Even if your numbers come back borderline or normal, please demand the FULL PANEL genetic test. There are over 1800 known CF mutations now, so having the full panel done is important. Usually, it is the insurance companies who require the second sweat test. They want two positive tests before they will agree to pay for the genetic test. You may have to fight with them over it. Do fight for it. You deserve answers!

It sounds like you may have finally found a doctor who will listen to you. Good! There are certain patients who get a clinical diagnosis of CF, meaning they have enough symptoms to justify it. Others get a genetic diagnosis. That is when they identify two known mutations in your DNA. Either way, getting treatment can do wonders for you. I've met people here who don't quite have a diagnosis yet, but are being treated as if they have CF, and they are benefiting greatly for it.

I hope you find this site as informative and supportive as I have. Let us know what you find out.

Stacey
 
J

JORDYSMOM

New member
Veneicia welcome to the site. I'm sorry you have gone through so much to get to this point. My son wasn't diagnosed with CF until he was 15 yo, because his symptoms were not glaringly obvious, and he was misdiagnosed pretty much the same as you have been.

I'm sorry about your parents passing. I'm sure your mom's wishful thinking clouded her judgement back when you were originally sweat tested. It's easy to understand though, because no one wants to hear that their child has a terminal illness.

The good news is that you are on your way to getting to the bottom of it now. Sweat tests are sometimes inaccurate. There are people on this site who have CF, but have normal to low sweat test numbers. Even if your numbers come back borderline or normal, please demand the FULL PANEL genetic test. There are over 1800 known CF mutations now, so having the full panel done is important. Usually, it is the insurance companies who require the second sweat test. They want two positive tests before they will agree to pay for the genetic test. You may have to fight with them over it. Do fight for it. You deserve answers!

It sounds like you may have finally found a doctor who will listen to you. Good! There are certain patients who get a clinical diagnosis of CF, meaning they have enough symptoms to justify it. Others get a genetic diagnosis. That is when they identify two known mutations in your DNA. Either way, getting treatment can do wonders for you. I've met people here who don't quite have a diagnosis yet, but are being treated as if they have CF, and they are benefiting greatly for it.

I hope you find this site as informative and supportive as I have. Let us know what you find out.

Stacey
 
J

JORDYSMOM

New member
Veneicia welcome to the site. I'm sorry you have gone through so much to get to this point. My son wasn't diagnosed with CF until he was 15 yo, because his symptoms were not glaringly obvious, and he was misdiagnosed pretty much the same as you have been.

I'm sorry about your parents passing. I'm sure your mom's wishful thinking clouded her judgement back when you were originally sweat tested. It's easy to understand though, because no one wants to hear that their child has a terminal illness.

The good news is that you are on your way to getting to the bottom of it now. Sweat tests are sometimes inaccurate. There are people on this site who have CF, but have normal to low sweat test numbers. Even if your numbers come back borderline or normal, please demand the FULL PANEL genetic test. There are over 1800 known CF mutations now, so having the full panel done is important. Usually, it is the insurance companies who require the second sweat test. They want two positive tests before they will agree to pay for the genetic test. You may have to fight with them over it. Do fight for it. You deserve answers!

It sounds like you may have finally found a doctor who will listen to you. Good! There are certain patients who get a clinical diagnosis of CF, meaning they have enough symptoms to justify it. Others get a genetic diagnosis. That is when they identify two known mutations in your DNA. Either way, getting treatment can do wonders for you. I've met people here who don't quite have a diagnosis yet, but are being treated as if they have CF, and they are benefiting greatly for it.

I hope you find this site as informative and supportive as I have. Let us know what you find out.

Stacey
 
J

JORDYSMOM

New member
Veneicia welcome to the site. I'm sorry you have gone through so much to get to this point. My son wasn't diagnosed with CF until he was 15 yo, because his symptoms were not glaringly obvious, and he was misdiagnosed pretty much the same as you have been.

I'm sorry about your parents passing. I'm sure your mom's wishful thinking clouded her judgement back when you were originally sweat tested. It's easy to understand though, because no one wants to hear that their child has a terminal illness.

The good news is that you are on your way to getting to the bottom of it now. Sweat tests are sometimes inaccurate. There are people on this site who have CF, but have normal to low sweat test numbers. Even if your numbers come back borderline or normal, please demand the FULL PANEL genetic test. There are over 1800 known CF mutations now, so having the full panel done is important. Usually, it is the insurance companies who require the second sweat test. They want two positive tests before they will agree to pay for the genetic test. You may have to fight with them over it. Do fight for it. You deserve answers!

It sounds like you may have finally found a doctor who will listen to you. Good! There are certain patients who get a clinical diagnosis of CF, meaning they have enough symptoms to justify it. Others get a genetic diagnosis. That is when they identify two known mutations in your DNA. Either way, getting treatment can do wonders for you. I've met people here who don't quite have a diagnosis yet, but are being treated as if they have CF, and they are benefiting greatly for it.

I hope you find this site as informative and supportive as I have. Let us know what you find out.

Stacey
 
V

Veneicia

New member
Welshwitch~
Thank you so much for your response and kind words! As wierd as it sounds, I'm actually happy the test so far has come back positive b/c at least there is a justification to why I am sick. I'm actually excited about going through this site and seeking different advice and tools I can utelize to help myself feel better. I think it's about time I start "living"
Sincerely your new founded friend
Veneicia
 
V

Veneicia

New member
Welshwitch~
Thank you so much for your response and kind words! As wierd as it sounds, I'm actually happy the test so far has come back positive b/c at least there is a justification to why I am sick. I'm actually excited about going through this site and seeking different advice and tools I can utelize to help myself feel better. I think it's about time I start "living"
Sincerely your new founded friend
Veneicia
 
V

Veneicia

New member
Welshwitch~
Thank you so much for your response and kind words! As wierd as it sounds, I'm actually happy the test so far has come back positive b/c at least there is a justification to why I am sick. I'm actually excited about going through this site and seeking different advice and tools I can utelize to help myself feel better. I think it's about time I start "living"
Sincerely your new founded friend
Veneicia
 
V

Veneicia

New member
Welshwitch~
Thank you so much for your response and kind words! As wierd as it sounds, I'm actually happy the test so far has come back positive b/c at least there is a justification to why I am sick. I'm actually excited about going through this site and seeking different advice and tools I can utelize to help myself feel better. I think it's about time I start "living"
Sincerely your new founded friend
Veneicia
 
V

Veneicia

New member
Welshwitch~
Thank you so much for your response and kind words! As wierd as it sounds, I'm actually happy the test so far has come back positive b/c at least there is a justification to why I am sick. I'm actually excited about going through this site and seeking different advice and tools I can utelize to help myself feel better. I think it's about time I start "living"
Sincerely your new founded friend
Veneicia
 
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